Next Generation: Bringing Our Patients’ Stories to Life
Next Generation is a Brigham Clinical & Research News column penned by students, residents, fellows and postdocs. If you are a Brigham trainee interested in contributing a column, email us. This month’s column is written by Mara Feingold-Link, MD, a resident in the Department of Medicine.
On the first day of my junior year of medicine residency, I walked into the West Roxbury VA cardiology workroom trying to hide how nervous I felt. Before rounds started, I sat down to run through our list of patients with my interns, hoping that discussing rough plans for the day would help me feel more confident. We paused when we got to our sickest and most complex patient. My intern noted, “Today, we’re running a family meeting with the patient and all of his children, though none of the attendings can join us.” My heart sank. I barely knew anything about the patient — how could I help facilitate a meeting about his inevitable and fast-approaching death? When I expressed a milder version of this fear to my intern, she directed me to a note in the patient’s chart titled, “My Story,” written by a physician colleague. The note was a first-person account of the patient’s life, including important moments and memories from his more than 80 years of life. Before I had even met the patient, I had tears in my eyes. Later that afternoon, we used stories from this note to connect with the patient and his family at the start of our family meeting, and to this day, that meeting stands out as one of the most productive and fulfilling of my career.
The note had been written by Susan Nathan, MD, a palliative care physician at the West Roxbury VA, who runs the “My Life, My Story” program there. The program got its start in 2013 at the Madison VA in Wisconsin and entails having a volunteer or member of the care team sit with a patient, interview them about their life and write a first-person narrative that is entered into the medical chart. Any patient can participate; they do not have to be at the end of life or on the palliative care service. The goal of the program is to help medical teams get to know the people they are treating – to understand the person behind the illness and humanize the care we provide. Thousands of these stories have been recorded and shared in the VA health system as part of this program.
With Dr. Nathan’s help, and the assistance of a handful of brilliant co-residents, medical students and attendings, we have been working together to bring this program to the Brigham. As part of this effort, I have been personally interviewing patients at the Brigham, which is how I found myself in the room of Mr. Roland Dudney.
He was a round-nosed man with a Welsh accent and a recent diagnosis of advanced adenocarcinoma, a cancer that begins in the glands but spreads throughout the body. His cancer was draining him of energy and making it hard for him to breathe. When my team first told me about him, they mentioned that his wife had died a few months prior. I knew right away that I wanted to know more about him and his story. I asked him three nights in a row if he felt well enough to speak with me. The third night was different because he had visitors. I sat down with my laptop while his niece, nephew, and friends stood to the side. I started with my regular questions about his childhood, but the interview soon transformed. What made my time with Mr. Dudney so memorable was that it wasn’t just the two of us, with him reminiscing and me rapidly clicking away at my keyboard. His niece, nephew and friends joined in on the memories.
His family members were a wonderful addition to the interview — they encouraged him to share more light-hearted stories about himself, many of which had him erupting in laughter before he even got to the punchline. They added stories as well, like when he accidentally ate berries from a bush that the local golfers used to relieve themselves on, or the time a cup of ice he was given for his drink in a Jamaican bar had come from the pile of ice around a corpse. His niece reminded him to tell me of the accomplishments he forgot to brag about, like starting a farmers market.
Like many of my other interviews, I was in the room with Mr. Dudney and his family for about 45 minutes. I asked many of my usual questions about his childhood, favorite memories from school, what his first job was, how he met his wife, what he was proudest of, and whether he had any advice to pass on. He told me that he never had children, but that his nephew, the one standing a foot from my elbow, felt like a son to him. When he spoke of his wife, the room got quiet. Her importance in his life was palpable, and his recent loss of her was still clearly raw.
While a major aim of “My Life, My Story” is to put these notes in the chart to help other care team members get to know their patients, I’ve also gotten immense joy participating in this program, spending time in the room with patients and listening to their stories. The best hours I’ve ever spent at my job involve “My Life, My Story.” It has helped me learn more about the impact of disease on one’s life, on the complexity of compassion, and how to better and more deeply empathize with my patients. And the benefit is not just mine. The patients continually tell me how much it means to them to have someone sit down with them to hear their story, and patients and their families love receiving copies of the stories after they’ve been finalized. When I left Mr. Dudney’s room, his nephew stepped into the hallway with me and pulled me aside. “Thank you so much for doing this,” he said. “I haven’t seen him this happy in a long while.”
I’ve cared for so many patients throughout my residency, and sometimes I only remember them from a single memory. Those mental images may be from a middle-of-the-night blood smear that showed new leukemia; strikingly yellow skin from advanced liver failure; holding the hand of a patient who needed a machine to help her breathe; or the time a patient’s blood pressure dropped and I sent him to the intensive care unit while my own heart was pounding. For Mr. Dudney, my most vivid memory of him is from inside that hospital room, where I sat amongst the people who loved him, all of us throwing our heads back in laughter as he sat up a little straighter in bed, beaming.
About the Program
The “My Life, My Story” program launched in the VA system in 2013 and was brought to the Brigham as an official program in 2019. The “My Life, My Story” program is currently taking place in the inpatient setting and will soon begin as a pilot in the ambulatory setting. If you are interested in learning more about the “My Life, My Story” program at the Brigham, email firstname.lastname@example.org.